Chapter lV:

Long-term Care

Options and Services

Part IV:    Long-term Care

Some days there won’t be a song in your heart. Sing anyway.

—Emory Austin, entrepreneur, author, and motivational speaker

THE FAMILY CONVERSATION #4

SHOULD YOUR LOVED ONE STAY HOME
OR MOVE TO AN ADULT CARE COMMUNITY?

While your loved ones may age in place with some assistance for several years, their physical or cognitive functions may gradually decline, requiring increasingly higher levels of care and outside support. Watch for warning signs such as:

  • Withdrawal from social interactions
  • Not bathing and neglecting personal hygiene
  • History of falls or bruises from falling or bumping into objects
  • Not eating well or losing weight
  • Signs of forgetfulness, such as piles of unopened mail or unwashed laundry
  • Mismanagement of monthly bills or odd purchases
  • Forgetting to take medications

At this point, families need to talk to their loved ones about creating a more formal, comprehensive long-term care plan, either at home or in some type of long-term care community—depending on their daily needs and lifestyle preferences. In general, long-term care involves a variety of services designed to meet a person's health or personal care needs during an extended period, helping them live as independently and safely as possible when they can no longer perform everyday activities on their own.

The level of long-term care needed depends on the extent of your loved ones’ functional and cognitive deficits. At the lower end of the “elder care continuum,” as elder law attorney Brian Tully calls it, a person may have moderate functional limitations, requiring a low level of care. But as a person moves across the continuum, their functions become more and more limited, requiring higher levels of safety and supervision, whether they’re at home or an assisted living community or, in cases of significant medical needs, a skilled nursing facility.

In short, assisted living communities can offer:  

  • A home-like setting that can help your loved one maintain as much independence as possible while providing help with activities of daily living (ADLs)
  • Available around-the-clock support (sometimes separate units for residents with dementia)
  • An environment that promotes a social, active lifestyle
  • Minor nursing but not full-time care

Skilled nursing facilities offer:

  • Help with activities of daily living for loved ones who are no longer able to care for themselves independently.
  • 24/7 “subacute” medical care for residents who do not need to be in a hospital setting.
  • Temporary stay for people who require post-injury rehab.

As I noted earlier this Navigator, (Chapter I, “Long-term Care: How to Plan (and Pay) for It” ),  families should anticipate the eventual need for long-term care and lay out options well before their loved ones’ needs reach a critical stage. “It’s always better to be proactive,” says Julie Wexler, director of business development for The Bristal Assisted Living. It’s important to get your loved ones involved early, she says, when they can still participate in the decision-making process.

The earlier you have these conversations, the more choices you’ll have—and conversely, the later you plan, the fewer choices will remain. Being proactive enables families to create the best possible financial plan to pay for long-term care—before they’re faced with a crisis. Generally, the higher the level of care, the higher the cost you’ll face. As long as a person can remain safely in their home, home-based long-term care is usually less costly. In the metro New York area, the median annual cost of a home health aide is $68,640 (assuming 44 hours of care per week), compared to a median yearly cost of $69,000 for an assisted living community, according to the Genworth Cost of Care Survey. As pointed out previously, Medicare does not pay for most long-term care services, which usually cover non-medical custodial or companion care—the kind of care your loved ones are most likely to need, at least initially.

Families should take another close look at various financial options listed in Part I of this Navigator, from long-term care insurance to downsizing their home in order to free up income for caregiving expenses. Also, if your loved ones plan to move to  an assisted living community, keep in mind that you have another important financial resource: funds from the sale of their house, which may cover much of the cost of assisted living. 

If your family’s resources (not including retirement accounts) are limited, a viable strategy may be qualifying for long-term care coverage under Medicaid or the Aid & Attendance Program of the U.S. Department of Veterans Affairs. But remember, Medicaid programs have stringent income and asset limits, including rules that penalize applicants for the transfer of family assets during the “look-back” period—that is, the five years before the application, if you’re looking for care in a skilled nursing facility. Even if you’re seeking Community Medicaid, which covers home care and assisted living communities, there will be a 30-month look-back period (although the exact phase-in date has yet to be determined).

 While the cost savings from Medicaid coverage may be substantial over time, there are some significant upfront costs, too, such as legal fees to restructure your loved ones’ assets. Also, Community Medicaid will limit your choices in terms of available Managed Long-Term Care programs (MLTCs) that administer home health services in your area. And Medicaid recipients are regularly reviewed to requalify for benefits, so family caregivers need to file paperwork each year and may have to negotiate with case managers to make adjustments or addendums in their parent’s care plan. (For more information about these plans, including a directory of MLTCs operating on Long Island, visit the state Health Department’s web site, www.health.ny.gov/health_care/managed_care/mltc.)

For Medicaid recipients or veterans, there may be additional opportunities to pay family members as caregivers:

CDPAP (Consumer Directed Personal Assistance Program)

www.health.ny.gov/health_care/medicaid/program/longterm/cdpap.htm 

A potential option for Medicaid recipients is a program known as CDPAP, which pays an hourly wage to family members or friends who are caring for aging loved ones at home. There are few formal requirements to serve as aides, although spouses not allowed to serve as “directed personal assistants.” You don’t even need to quit your current job; working as a family caregiver does not necessarily interfere with other employment. And CDPAP offers much more flexibility than traditional Medicaid, allowing the care recipient or family caregivers to choose how to allot the weekly hours based on their own schedule and needs to make sure that their parents’ needs are met. In addition, family members can provide help in areas that traditional Medicaid aides cannot, such as driving parents to appointments or testing for blood sugar. For more information about the requirements for CDPAP, contact the Nassau or Suffolk social services departments of offices for the aging.

Veteran-Directed Care

www.va.gov/geriatrics (Click Home and Community Services)

Similar to CPAP, Veteran-Directed Care is a program that gives Veterans a flexible budget to manage their own home care or long-term care. Providing they meet the clinical requirements for the program, Vets can decide what mix of services best meet their needs; hire their own personal care aides (which may include a family member or neighbor); and buy items and services that will help them live independently in the community. The program is only available in certain locations.

Here are more general resources to help you assess long-term care options

Here are more resources to help you assess long-term care insurance

Like many elderly parents, my mother wanted to stay in her home until she died, and my brothers and I promised that we would try to honor her wishes. She was our Mom—an incredible mother who had made so many sacrifices and poured so much love into our family that there was never any question that we would try to do everything possible to keep her home. I’m sure that’s true for many families.

As it turned out, we were able to meet Mom’s medical needs through home care agencies, doctors, nurses, and other professionals who visited Mom at home—and were covered by Medicare and Medicaid programs. But it was not easy. Especially when we were caring for Mom during her late Alzheimer’s stage.

If you’re considering long-term care options at home, take another look at the steps in Chapter III, (“Hiring Home Care Aides”).  My family began by paying privately for a part-time custodial home care aide, largely to support one of my brothers, who was living with Mom and lovingly took on many responsibilities—but also needed daily respite periods. As Mom’s health became frailer, we realized that Mom would need much more custodial care and we had started doing some legal and financial planning several years earlier. Working with an elder law attorney, we reorganized Mom’s assets and finances, enabling her to qualify for New York State Community Medicaid, which initially covered the cost of custodial or companion care from licensed home health care agency aide for several hours, five days a week.

Over time, Mom’s physical and cognitive capabilities continued to diminish. She was no longer able to speak or walk well; she needed a walker to get around inside and a wheelchair to be taken outside. We realized that we needed a well-crafted plan that integrated a team of family members, professional caregivers, and an array of health care providers. And we knew that even with our best efforts, if Mom’s health needs increased to a level that required daily skilled nursing care—not covered by Community Medicaid—we might have no choice but to move her to an adult care facility.

In my Mom’s case, this meant scaling up to a 24/7 live-in schedule of home health aides, a request long-term care case managers carefully scrutinize. Eventually, with the help of her Medicaid case supervisor at the county Social Services Department, Mom was able to qualify for 24-hour home care as a member of the state’s Medicaid Long Term Managed Care Plan.

Collaborating on a care plan with the home care agency, my brothers and I adjusted our mother’s eating regimen, making sure she was fed more slowly; and was always upright during meals; pureeing much of her food to avoid choking; and keeping her hydrated with frequent snacks of sugar-free ice pops as she faced increasing difficulty swallowing liquids.

Mom’s aides were diligent in taking care of her personal hygiene needs, grooming and dressing her, feeding her and moving her throughout the day as she became less ambulatory. That said, my brothers and I also had to remain regularly involved, giving Mom her daily medications; administering light exercises which we had been taught by her physical therapists; and taking her to doctor’s appointments and wound care treatments. Ultimately, family caregivers need to remain advocates for their loved ones, working in partnership with professional home aides and other health care professionals.

CONFRONTING LONELINESS & SOCIAL ISOLATION

As noted in the previous section on “promoting social engagement”, maintaining social relationships is critical to everyone’s overall health, whatever your age. Health experts also emphasize that social engagement acts as a significant buffer against dementia as you get older.

Yet when people age at home for long periods of time—especially in the suburbs—the more likely they are to end up socially isolated. As we get older, we tend to lose our natural social networks. Children and friends move away; spouses and relatives pass away; and with decreased physical mobility, it’s harder to get to church, community events and other social activities.

Researchers have found that even before the coronavirus forced us into social distancing, we were experiencing an epidemic of loneliness across many age groups worldwide. Nearly 1 in 4 older adults fit the definition of socially isolated, without routine social contacts, and that can be harmful to both physical and mental health. Social isolation has been associated with a significantly increased risk of heart disease, cancer, stroke and dementia.

In my own family, my brothers and I grew up with a mother who was extraordinarily social and engaged in many activities at her church, in our schools and neighborhood, while also orchestrating myriad family events: creating a local classical concert association; teaching weekly china-painting classes; and tutoring students in Spanish (Mom was a native Cuban). But as Mom became less ambulatory and reluctant to drive at night, it became clear that we needed a family plan to help bring social engagement to her. For a time, we brought her to adult day programs several days a week, offered by local health-care facilities. (See next section for more information about adult day services.)  And we organized a schedule of daily and weekly activities that each of us could do with Mom on our regular visits.

As I pointed out earlier, there are lots of virtual opportunities to help your loved ones stay involved while they also age in place safely in their homes. There are video-chatting platforms like Zoom that can connect them with their family, join their friends in social activities, or participate in online courses, programs, museum and gallery tours. (See Social Engagement Resources)

For seniors who are particularly isolated, perhaps living alone, there are additional resources that can help provide regular social connections. AARP, for instance, offers these programs nationwide:

  • AARP Community Connections (https://aarpcommunityconnections.org/) Online tool to assist communities in forming informal groups of volunteers of all ages that band together to find effective ways to support neighbors.
  • Connect 2 Affect (https://Connect2affect.org) Sponsored by the AARP Foundation, this site offers resources to help people nationwide overcome social isolation and stay connected, including online support, community programs and services and a friendly texting  tool called Chatbot.
  • Friendly Voice Program (www.aarp.org/friendlyvoice; 888-281-0145). Trained AARP volunteers can call seniors across the nation who are feeling lonely or isolated and request to talk with someone who can help lift their spirits.

The Friendly Voice Program, which was started as the first wave of the coronavirus shut down many communities, has already made tens of thousands of calls to seniors nationwide. “I provide a 10-to-15-minute chat about light topics that bring joy to a person, such as places travelled, favorite memories, their profession, their family, hobbies and stories about the town or city where they live,” says Dorie Ciulla, a co-facilitator for AARP’s North Hempstead chapter. “My goal is for the both of us to hang up at the end of the call, smiling.”

Making connections outside a person’s peer group can be particularly helpful, says Dona Butts, executive director of Generations United, a national organization that promotes intergenerational programs. Bringing different generations together often results in more enlivening conversations, beyond the usual “what hurts?” and “what medications are you on?”  Some well-known intergenerational programs include:

  • Big & Mini (www.bigandmini.org). Matches older adults with people generally 18 to 25 years old through video calls.
  • Eldera (www.eldera.ai). Pairs mentors 60 and older in the U.S. with children ages 5 to 18 from 22 countries through video chats.
  • Dorot Caring Calls (www.dorotusa.org). Connects older adults with volunteers age 18-plus through weekly phone calls.
  • Sageconnect (www.sageusa.org/sageconnect). Pairs older LGBTQ adults with volunteers from various generations through weekly phone calls.

There are also “telephone reassurance” and check-in programs offered by local senior centers and agencies (see Local Social Service Organizations), such as North Hempstead Town’s Project Independence.

Similar programs are offered by nonprofit organizations, including

the Retired and Senior Volunteer Program (RSVP) in Suffolk County
(www.rsvpsuffolk.org/ 631-979-9490 [Smithtown]; 631-267-8371 [Amagansett];

the Mid-Island JCC (www.miyjcc.org; 516-822-3535;

Family and Children’s Association (www.fcali.org; 516-746-0350);

and Catholic Charities of Long Island (www.catholiccharities.cc; 516-733-7000).

ADULT DAY SERVICES

Adult day programs—perhaps the least known service in the elder care continuum—are designed to provide specialized care and socialization for frail older persons, including those with dementia, while also giving families daytime respite from their caregiving responsibilities.

These programs are offered in structured settings, often through town and city government agencies or private assisted living, nursing and other health care facilities.  Programs include a variety of health, social and related support services offered during any part of the day, but for less than 24 hours. They are usually described as either social or medical model programs:

  • Social model programs provide socialization, personal care, supervision, recreation and a healthy meal, within a protective setting.
  • Medical model programs are designed to meet the needs of those elderly who require medical and rehabilitative services in addition to the services offered by social model programs. Medical adult day care programs are licensed by the New York State Department of Health.

Eligibility, fees and services vary. Most social model programs accept a variety of payment sources, including